Harris Anna, Kelly Susan E, Wyatt Sally
ESRC Centre for Genomics in Society, Egenis, University of Exeter, Byrne House, St German's Road, Exeter EX1 4PJ, UK.
J Genet Couns. 2013 Apr;22(2):277-88. doi: 10.1007/s10897-012-9548-0. Epub 2012 Oct 25.
Individuals now have access to an increasing number of internet resources offering personal genomics services. As the direct-to-consumer genetic testing (DTC GT) industry expands, critics have called for pre- and post-test genetic counseling to be included with the product. Several genetic testing companies offer genetic counseling. There has been no examination to date of this service provision, whether it meets critics' concerns and implications it may have for the genetic counseling profession. Considering the increasing relevance of genetics in healthcare, the complexity of genetic information provided by DTC GT, the mediating role of the internet in counseling, and potential conflicts of interest, this is a topic which deserves further attention. In this paper we offer a discourse analysis of ways in which genetic counseling is represented on DTC GT websites, blogs and other online material. This analysis identified four types of genetic counseling represented on the websites: the integrated counseling product; discretionary counseling; independent counseling; and product advice. Genetic counselors are represented as having the following roles: genetics educator; mediator; lifestyle advisor; risk interpreter; and entrepreneur. We conclude that genetic counseling as represented on DTC GT websites demonstrates shifting professional roles and forms of expertise in genetic counseling. Genetic counselors are also playing an important part in how the genetic testing market is taking shape. Our analysis offers important and timely insights into recent developments in the genetic counseling profession, which have relevance for practitioners, researchers and policy makers concerned with the evolving field of personal genomics.
如今,个人能够获取越来越多提供个人基因组学服务的互联网资源。随着直接面向消费者的基因检测(DTC GT)行业的扩张,批评者呼吁在产品中加入检测前和检测后的遗传咨询服务。几家基因检测公司提供遗传咨询服务。迄今为止,尚未对这项服务的提供情况进行审查,包括它是否满足批评者的担忧以及它可能对遗传咨询行业产生的影响。鉴于遗传学在医疗保健中的相关性日益增加、DTC GT提供的遗传信息的复杂性、互联网在咨询中的中介作用以及潜在的利益冲突,这是一个值得进一步关注的话题。在本文中,我们对DTC GT网站、博客和其他在线材料中遗传咨询的呈现方式进行了话语分析。该分析确定了网站上呈现的四种遗传咨询类型:综合咨询产品;酌情咨询;独立咨询;以及产品建议。遗传咨询师被赋予以下角色:遗传学教育者;调解人;生活方式顾问;风险解读员;以及企业家。我们得出结论,DTC GT网站上呈现的遗传咨询表明了遗传咨询中专业角色和专业知识形式的转变。遗传咨询师在基因检测市场的形成过程中也发挥着重要作用。我们的分析为遗传咨询行业的最新发展提供了重要且及时的见解,这对关注个人基因组学不断发展领域的从业者、研究人员和政策制定者具有参考价值。